Tag: Terminal illness

“Hello to the world at large,” she said in the video. “To my blog, to my friends, to everyone. I have some news today. It’s kinda tough to hear, but I can say it with a smile.” Propped in a hospital bed, Markvoort sat surrounded by her family. “My life is ending.”

Markvoort had cystic fibrosis, an incurable disease that causes mucus to accumulate in the lungs. For nearly four years, she narrated an unvarnished blog about life with a terminal disease. Even when it appeared unlikely that she would receive a second double lung transplant, the 25-year-old continued to chronicle life on her blog….

Markvoort started her blog in 2006 because hospitalized patients with cystic fibrosis were isolated because of infection. Alone in her hospital room at Vancouver General Hospital after visiting hours, she sought to connect with other patients by finding them online.

The blog’s name 65_RedRoses, originated from her childhood inability to pronounce cystic fibrosis; she, as have many other children with the disease, called it “65 roses.” Markvoort added the word red because it was her favorite color.

Markvoort was the subject of a Canadian documentary also called “65_RedRoses.” It showed her harrowing experiences with the disease: violent coughing, vomiting, IVs, the painful procedures that made her scream.

I have a soft spot for VGH because my mom spent six weeks there recovering from a six-hour neurosurgery that removed a four-inch-wide tumor from her brain. I found tremendous skill and compassion from their staff, from their warm social worker who comforted and helped me through it to her plain-spoken surgeon (and his son, a fellow MD), to her lovely physical therapist.

Dying has always been a pretty private affair. If sharing their end with millions of strangers offers comfort, what other remaining choices do the dying have?

In the same style that she had allowed her readers (who were often strangers) into her life, Markvoort’s family plans to hold a memorial service that will run in a live stream on her blog at 7 p.m. ET Friday.

“She indicated that she thought it would be a cool idea if whatever we did, was made available for her online blogging community,” her mother said.